Saturday, April 28, 2012

The New Nurse....

.

So I take Noah and Nathan to their Pediatrician ... mind you, they have a different doctor than the rest of us because of their insurance. Anyway - their Ped's normal nurse was very pregnant last time we saw her, and she wasn't there. It was some new girl. So we get there at 3 for a 3:15 appointments, we sign in and wait to be called.

No one is up there....

No...... the receptionist is way too busy talking personal life with one of the nurses .....

This goes on and on and on ... at 3:10 some guy walks in and gets checked in right away ....

At 3:15 a couple of ladies walk in and sign in ... the receptionist makes some joke about them being right on time....

Another minute passes by as she continues to talk personal life with the other receptionist who is also doing nothing (well she might be doing something on her computer .... )

Another minute or so passes ... finally we get called up to the window to check in at 3:18 ... REALLY?

So I get them checked in - initial this and this and go sit down.

I go sit back down with the boys ... the door finally opens and there stands this new nurse ... apparently the normal nurse is on maternity leave?

"Nathan" She says ...

So I get up - start gathering the jackets and my bag ... and Noah goes "Should I come too?" ... "Ah, yeah Noah." So he gets his stuff and follows.

We get behind the door to their little weigh in station and the nurse says "Nathan can you please take off your shoes" and I notice she's looking at Noah. I'm still trying to juggle stuff and put stuff down. She repeats herself, looking straight at Noah.... So I said, "That's not Nathan," I point to Nathan now that I got the stuff out of my hands... "That's Nathan," so I grab him and start to help him take off his shoes.

"This is for a five year old?" she says .... Nathan looks two and Noah looks like he's six or seven... I can see where the confusion takes place ...

"Yes," I said. "He is five."

She looks really confused, looks at Noah again.

"I'm ten!" Noah tosses in.

"Oh," she says ... obviously still confused.

Lesson One: DO NOT ASSUME!!! It's awful simple to ask "which one is" when parents come in with more than one child - unless one is obviously a baby and the other is older....

Nate hops up on the scale. 26 lbs... and he was 37 inches (I think)

After Nathan gets weighted and measured ... I said, "I have Noah too, they both have DR appt with DR A."

"huh?"

"Noah has an appointment with Dr. A. too."

"Oh, what's his name?"

"Noah." Didn't I just say that?

She disappears and comes back with his chart. Tells him to take off his shoes.... he's 56lbs ... "DO I WEIGH THE SAME AS NATHAN" he trembles.

"No, you weigh more," I say. He's relieved. Silly boy.

We get back into the room.

She goes through vitals and all that for both kids... asks me a million questions .... then leaves.

I bring out Nate's blue bird and green piggy so they can play Angry Birds while waiting.

15 minutes later .... she comes back in and takes Noah's blood pressure again and leaves...

They are bored playing Angry Birds, not to mention - the "sound" box for the blue bird got broke there... lovely - Nathan is wigging out ...

They play Doctor for awhile, I think I got 500 shots between the two of them.... every one of them was administered with great care, while I was reading, I didn't feel a thing.

5 minutes later .... knock on the door - I'm thinking it's the DR .... nope, it's the chatty Cathy receptionist who decided she needed to go pen hunting and comes in and steals all the pens from the room claiming "there's so many in here" and "I don't need many" but then I hear her knocking on another exam room when she leaves ours....

2 minutes later the nurse comes in and hands me some papers "Oh these are for
you, are you done with those?" pointing to the ones the desk had given
me. "Yes" I said and handed it to her... ... walks out. I notice there are two more pens under where I had put the clipboard...

Kids are still bored.... we try to sing Old McDonald Had A Farm ... but the only thing he had on the farm was a DINOSAUR and who knew Old McDonald lived on the island of Jurassic Park???

The kids then proceeded to be dinosaurs. Noah was a Velociraptor and Nathan was a Triceratops... how do I know? Noah announced it and Nathan was a series of questions and knowing his favorite dinosaurs... plus he kept head butting Noah... LOL... impaling him with the three horns I assume.

10-15 minutes later .... Knock ... DR is finally here....

"I'm sorry about the wait but there is a lot to review for your kids.... "

"Nah," I counter. "Not my kids. Couldn't be my kids."

She laughs.

She's looking at the kids - who are still pretending to be dinosaurs.... I say "they are dinosaurs"

"I see that," she says.

So it's suppose to be a well-child check for Nathan and Noah ... and I told her that I wanted to talk to her about Nathan's cough because it's concerning me. I tell her about it and she brought up whooping cough - which is something Dennis and I thought it might be. If he has it, I think it's mild. But it's still concerning. She wanted to give him a little while to see if he gets over it over the weekend. He has an appointment for his well child check up now on Tuesday - because they can't seem to do more than one issue at a time. His lungs are clear - etc and so on. So she wanted to wait - because the test isn't pleasant... We talked about how I originally thought it was Nathan's asthma so I had been given him nebbies and how I even thought about giving him some of Kaedyn's prednisone .... but I didn't. I couldn't remember the dose of his albuteral cartridges .. she said if it was under 2.5 to double up (it's 2.5) ... so I'll wait to see if she still wants use to double up or just stick with one.

When the DR came in .... Nathan was okay - when she went to examine him - he flipped out and ran into the corner behind the exam table and was screaming - I had to pull him out. Once the exam was over and I put him on the floor - he ran off and hid under a chair - sometimes screaming - until the appointment was over, this isn't like him .... at all. :(

Nathan's coughing fit while playing Wii Tennis with Kaedyn (long video, the tennis is funny, coughing fit happens at about 1:20 in with some little coughs, has a bigger one at 2:40 and again at 3:05 ... but these are mild compared to a lot he's had)

Nathan's coughing fit this morning (short video - all about his coughing, I didn't catch most of it, this is the tail end, there was gagging involved in this one
...)

Then she moves onto Noah .... everything looks good other than he is having issues getting himself clean (from the bathroom) ... :::sigh::: She brought up follow ups we're suppose to have, two of which we already did ... one I need to schedule ... When she checked his back for scoliosis - it was funny - she got her scolimeter ... and kept taking measurements over and over and said "I think he's just not standing straight or something. I told her "His left leg is longer than his right, so yeah, he can't help it." LOL...

She leaves but pops back in saying that Noah's blood pressure had been high ... that the systolic number was high ... normal is lower than 111 ... and his was 116 (one of the times) ... the nurse came back in and took it again and it was normal. Noah gets super anxious for appointments - so I'm not surprised I guess.

The nurse prints off the papers from the appointments (appointment summaries) and then says goodbye...

So we get jackets on and clean up our stuff... and walk out the door to the exam room....

... in the hallway after we round the corner I hear "Oh hey - wait" and so I'm directing the kids back towards our room we had been in - as I'm rounding the corner with the kids I hears "Wait Nathan's Mom" ... and she's standing at the other end of the short hallway ... so she says "hang on" and she's searching for something. She comes back with a pulse ox monitor .. Nathan puts his finger in and after a little while it starts going - his oxygen is only at 85% ... after awhile of it staying there she takes it off and starts doing it again ....

Then this other nurse comes along - she's probably captivated with Nathan's adorableness ... and she stops, literally hovering over him ...

I'm thinking .... Lady, this kid has autism, he doesn't LIKE to be hovered over unless it's one of the family .... I'm expecting him to start curling up into his ball or come closer to me OR start screaming, but he's good - he doesn't move.... He stands there with his finger in the thing. The other nurse says "Sometimes it helps if you put two fingers in there" but then it starts up again ... this time his ox starts out at 93% then dances around 97-96% ... she took the 97% ...

THEN we left.... thankful that was all over. We got there at 8 and left at 10:10 ....... yep, two hours and ten minutes.......

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THERE ARE SPECIAL EDITION NEWSPAPERS, THINK OF SPECIAL NEEDS CHILDREN AS SPECIAL EDITIONS

HEALTHY CHILDREN ARE LIKE DAISIES, THEY JUST NEED THE BASICS OF CARE – FOOD, SUN, WATER

CHILDREN WITH SPECIAL NEEDS ARE LIKE ORCHIDS – THEY NEED THE BASICS AND MORE LOVE, CARE, NURTURING, ETC TO GET TO SURVIVE, BUT THEY ARE JUST AS BEAUTIFUL AS THE DAISIES.

Every Little Bit Helps!

Help My Boys Get To Disney!

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In the Garden of Motherhood, I was given Unique Flowers... ones who weren't made quite like the other flowers... but are loved so much more because they are my own special blooms!

* * * * * * * * * * * * *

My children are unique flowers... just because they have "special needs" doesn't make them any less who they are, any less amazing... their fights have been true miracles, and in my eyes ... their lives are as delicate as a snow flake, no two the same, landing on your warm skin... you must take care to meet their needs.. as their petals thrive and bloom... they are no less beautiful then everyone else .. they are just unique.... individuals.

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http://www.ted.com/talks/rick_guidotti_from_stigma_to_supermodel.html

5 years ago

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Ongoing Fundraising ....

We are currently running a fundraiser for our kids, Nathan and Noah - who both have different rare genetic disorders. Please take a moment and read about them! We are trying to raise money for some things insurance doesn't cover, and to get to a conference next summer (2014) if we can. We are focusing on two things right now, both costing over $5,000. If you can donate, wonderful, every dollar counts and is greatly appreciated. Please click the link and check out ourFUNDRAISER.. You can read their stories more by clicking on the page links above...

Fundraising for Noah & Nathan

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If you would like to donate in another way, like sending us a donation or have a fundraiser for the boys, please contact us for further information: MammaRazzi13@aol.com

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About Me

I am a loving Wife and the mom to 4 boys, a daughter-in-law, and 1 step daughter. Nonna to two grandbabies.

Calahan (22), engaged to Shila (23) Grandbabies: Clairah (4) Elly (2)

Noah (16)

Jessa (13)

Nathan (10)

Kaedyn (9)

Noah and Nathan both have extensive medical issues. Noah has a rare genetic disorder called Mosaic Trisomy 16. Nathan has a lot of medical stuff going on, a very long list, but no main diagnosis.

I am a photographer, a writer, an all around creative sort. I have CFS/Fibro & at-times severe Psoriasis issues, diabetes, and back issues (degenerative discs, etc) . My husband has severe back issues stemming from a fracture in his back, and also Fibro.

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CALAHAN JOSEPH ~ January 5, 1996

Calahan was a surprise.. My ex-husband and I haphazardly decided to try to have a baby after we got engaged. I was only 18, he was 19 ... and it was silly - I was ready for a baby but he was NOT. Course you don't realize that until you fast forward yourself through life. He was due December 25, 1995 - Christmas Day. He was born January 5, 1996... coming overdue and in at 8lbs 7oz and 20 1/2 inches long.

Links For Calahan

NOAH ALEXANDER ~ February 1, 2002

Noah was a baby faught for... Found out at 4 months pregnant that he has a rare genetic disorder called MOSAIC TRISOMY 16. He was due St. Patricks Day 2002. He was born February 1, 2002... coming in at 1lb 12.2oz and 13 3/4 inches long. He was a fighter from the moment of conception.

Complications at Birth: Low Micro-Preemie Birth Weight, On Vent for 40 hours, Brachycephaly craniosynostosis, enlarged right kidney, ASD & VSD (3 holes in his heart all together), eye pupils shaped like footballs, Hypospadious, Natural Circumcision, Hyperbilirubinemia, he had both Apnea and Bradycardia (Brady’s he had, Apnea he didn’t start until a few weeks before his due date)... Brain scan at one point showed some fluid on his brain that was later declared a "variation of normal", umbilical & double groin hernias ...

Complications Past & Now: Small size (At 5 he was 30lbs), mildly physically delayed (mostly due to his small size)... he has dealt with and continues to... oral sensitivity issues (taste & texture)... sound sensitively issues... speech delays....low muscle tone (very bothersome)... hearing loss in his left ear (hearing seems to have gotten worse - 2007)... surgery to correct the hernias @ 6 months, surgery to correct the hypospadious @ 13 months, surgery to put tubes in his ears at 2 years.. went through various gastro testing due to mysterious vomiting issue...

April 2007 - got C-DIFF bacterial infection from antibodics and started to go into Kidney Failure, he almost died.

April 2009 - Noah's heel cords are very tight again, and he needs stretching out every day. If his tone is not better, then by early next year he'll have to be casted for 3 weeks.

August 2009 - Noah has been having increasingly more blood in his urine showing that his kidneys are getting worse. Right now the kidney tests are coming back okay but it's being kept an eye on.

March 2011 - We found out his tone issue isn't just below his knees but effects his whole leg, so they took casting off the table. Also, he doesn't really let anything hold him back. He doesn't really run, he sorta side skips quickly sometimes, and there are times he will actually run, but over all, Noah is just Noah. His kidneys are just something we're going to have to keep an eye on. Noah ended up being hospitalized for a night at Seattle Childrens when he had Influenzia A ... it was attacking his kidneys and he was spilling out a large amount of blood in his urine, his kidney's bounced right back but it was a scary moment. His hearing seems to be getting worse so he's got some hearing tests coming up.

August 2011 - Noah fell down the stairs to our apartment and broke his nose and had to have surgery to fix it. He couldn't go outside and play for awhile due to everyone being afraid he might hit it and trying to avoid another surgery.

September 2011- Noah failed his hearing test in his left ear. Not only is it typical hearing issue but it's in his ear bones too. So it's a lifetime loss, it's not just because he gets fluid built up. So he was fitted with a hearing aid on his left ear. He was super excited to get it, but once he got it - it was very weird and sensory issues ... it was overwhelming for him. So he's only wearing it for school at the moment, even that was a fight.

JESSA LYNN

Jessa is my step-daughter... My Husband's baby girl from a previous relationship. We met soon after he split up from her mom. I haven't had the pleasure of meeting her yet, but I love her, she is part of our family and will be no matter what!!

NATHAN PATRICK ~ April 19, 2007

Nathan was a surprise.. My Husband & I were going to start TTC the month following the month we got pregnant... we found out at 20 weeks, there were complications... with another pregnancy... needless to say, I felt useless and broken. He was due May 13, 2007 - Mother's Day. He was born April 19, 2007... coming in at 3lbs 4oz and 15 3/4 inches long.

Complications Past & Now: Came home on an NG Tube (ended early June '07)... Feeding Issues .. Oral Sensitivity... Torticollis ... Hydrocephalus (August '07, Sept '07)... a Bifid Uvula (explained to me as an upside down heart shaped uvula), he also has some tone issues where they are very loose. Undescended testicles....Aortic Septal Defect...

9 months old: Poor kid has his first Ear Infection, pneumonia, his first diaper rash AND cut TWO teeth all in ONE WEEK! Poor baby!!!

updated April '09 .. there are now suspicions of Russell-Silver Syndrome, hypothyroid, and he has been showing some signs of some sort of Autism (has genetic tests pending, along with more blood work to be done and a evaluation with the Autism Clinic pending) ... He has officially been diagnosed with Failure to Thrive. He also has mild Scoliosis, and is most likely going to start HGH (human growth hormone) in the Fall.

updated August '09 ... All of Nathan's genetics tests have come back fine, including the RSS. Not sure what that means exactly since I read that the genetics test may not be 100% ... and the way he seems to fit. However at this point, it just seems to be one more diagnosis in a long line. He had tubes put in his ears in June and seems to be doing much better with hearing and slowly progressing with speaking. His appointment with the Autism Clinic is Sept. 16.It was determined that Nathan would need more testing before officially diagnosing him with "Autism" however there is more signs there to warrant further testing.

update November '09 ... Nathan had his first hypospadious surgery, and had his undescended testicle on his right side moved down to where it is suppose to be. It went well for the most part, but he came home with a catheter which had to stay in for several days. He'll have to have the second surgery in about 6 months.

Update April '10 ... Nathan has officially been diagnosed with Russell Silver Syndrome

Update August '10 ... Nathan has been going through a lot. He had started Autism testing early in the year, but we stopped due to the fact that we were making a big move from WI to WA State... we have re-started the process of the Autism testing here. We also have talked to his new Urologist about the 2nd surgery for his hypospadious, and in addition, he will need a 3rd surgery for his undescended testicle that has gone back up, they aren't sure if they can try to move it down again or if it'll have to be removed. We also ended up going to the endocrinologist for his hypothyroid and to discuss starting HGH (human growth hormone) after his official diagnosis of the RSS. The process has begun and we'll be going to "train" to give him the daily injections soon.

Update September '10:So ...he had his 2nd hypospadious surgery, and it ... for the most part ... went well, but we had the blessing of dealing with another catheter ... at least this time we didn't have to deal with the bag and whole deal, he just had the tube there so it could leak into the diaper. We actually had to double diaper him, the inside diaper to catch the poo and there was a hole for his plumbing to be supported (due to the surgery) where it could leak into the outside diaper. It was a very very rough week after the surgery, and even after.... but we managed, and survived. He was in a lot of pain. A little while after, we discovered that he had a couple of holes (fistulas) open up and so he has urine streaming through a few holes... so, hopefully he doesn't need a 4th surgery! We'll see though. But ... Part 2 is done! He also had dental surgery to put caps on all of his teeth due to them all rotting thanks to his high calorie diet. :/

Update January 2011:It's official, Nathan has been diagnosed with Autism (specifically, PDD that they believe is due to his multitude of medical issues) ... which I completely agree with. IN addition to that, it has been mentioned based on his last MRI that he is actually MISSING some of his cerebellum, specifically the Vermis .... and that he may not have Dandy Walker, but rather Jouberts (pronounced Joe-Bear's) Syndrome... we are seeing one of the nations #1 expert genetics Doc about it. So we shall see..... we... shall... see.... (no Jouberts Syndrome, sticking with Dandy Walker Varient & RSS)

Fall 2011 ... We've seen cleft palate specialists and they said that if he failed his hearing tests (which he did) that he would have to have surgery on his sub-mucus cleft palate. Also - a speech lady came in, she feels he has a speech disorder called "Dyspraxia" ... and she feels he's going to only be able to communicate properly through communication devices.

December 2011 ... Nathan had a one hour EEG done and then a 24 hour video EEG ... we recently saw Neuro and found out everything is a-ok :D No seizure activity found.

May 2012 ... My amazing Nathan has been through a lot this month! He has been approved to get a communication device, which we won't get for 4 to 6 months (thanks to insurance red tape) and on May 25th he had surgery to repair his cleft palate, got tubes in his ears again, and his uvula was patched. Now he's home and recovering!

September 2012: After a little debate and several failed hearing tests, Nathan was fitted for hearing aids in both ears. He will be getting them in November.

KAEDYN PHILLIP RUSSELL ~ September 9, 2008

Although I we knew we wanted another baby, that pregnancy test turning positive was a shock. Things were crazy after we found out that we were pregnant again. Dennis was worried about money and my health, and everything else. At 18 weeks we got the perfect amnio results showing everything was genetically fine and it was indeed our FOURTH boy!! I did get sick again, but I felt GREAT! For the first time I developed GDD, and I flirted with Pre-eclampsia like usual. But over all the pregnancy was great and I even ended up going into labor on my own 10 days before his September 19th 2008 due date. We had gone in for an amnio to check his lungs to see if he could be delivered and found out I was having contractions every 2 minutes and was 3 cm dialated! Oooooh boy! Things moved quick from there, and I was in the c-section room before I knew it. Kaedyn Phillip Russell was born September 9th, 8lbs 3oz and 18 3/4 inches. He started crying before he was even out of the womb (or had his mouth clear!) ... and he showed the world he had a GREAT set of lungs by not stopping until he was in my arms. He also baptized everyone showing his boy parts worked REALLY well over and over and over.. just when you thought it was done, it started back up!

Pregnancy Complications:(Mom) Gestational Diabetes, Hypertension.... Limited Activity to complete Bedrest, (Delivered via c-section - planned - but moved quickly after found out I was in labor)

January 2010: Kaedyn had a scare with his heart last fall. His murmur got load and everything turned out okay but it did freak Mom out a lot. And his eczema is horrible. It's full body and I can't seem to get rid of it for him. Now we've been back to the DR about it and got a stronger ointment to put on it (with steroids) and a ton of different lotions we bought to try to see what helped him. After only a few days on the new ointment he's much better.

April 2012: Kaedyn is taking after me by more than just looks! He has apparently grasped my allergies too. After a few days with extremely bad hives, he had to go into the allergist. He definitely has allergies, and I suspect it's to more than just dog, cat and grass ....